Tracy, an opera singer, artist, and activist based in San Francisco, never let anything slow her down. Then, at a pivotal point in her career, she had a stroke. “I was about to make my debut at the Metropolitan Opera,” she says. “Everything was complicated by the fact that I had a huge career milestone rapidly approaching.” Tracy needed to jumpstart her recovery in order to rehearse for her debut in New York, just six weeks after her stroke.
"There's such a big gap when you leave the hospital, when you leave the rehab center, you go from this huge team of people to being expected to be home and to just figure it out yourself– and that is really frightening."
Personalized Stroke Recovery Plan
Tracy got connected to Kandu about a week after her stroke. Because each stroke survivor is unique, Kandu Navigators personalize the program to meet each survivor’s needs.
“There's such a big gap when you leave the hospital,” she says. “You go from this huge team of people to then just being expected to be home and to just figure it out yourself.” In addition to all of the follow-up appointments after her stroke, Tracy had the added stress of trying to navigate travel from San Francisco to New York City for her debut at the Metropolitan Opera.
“It was a debut that I’ve worked towards for 15 years, and so it felt like it was all hanging in the balance,” she says. “Kandu was really helpful in helping me understand what I was going through and that I wasn’t alone.”
Faced with a temporary cross-country move to a new city, Tracy had many questions, including how she would possibly follow up with doctors and have continuing care across the country.
Tracy’s Navigator, Melanie, was committed to helping her reach her goals and make it to New York. “Melanie just helped me figure out everything,” she says. “Everything was easier because of her.”
Melanie helped with practical things, like identifying accessible travel accommodations and connecting Tracy with a physical therapist in New York. “She connected me with tangible resources every week,” says Tracy. “Kandu made me feel like I not only wasn’t alone, but that I was going to recover and be able to achieve what I wanted to achieve.”
Support for Survivors and their Care Partners
For many stroke survivors, including Tracy, stroke can be an isolating experience. “Unless I tell people that I’ve had a stroke, they don’t know,” says Tracy. “Mine is a very invisible disability.”
In the midst of preparing for the Metropolitan Opera, Tracy was also focusing on her recovery. “All kinds of things have changed for me, including my audio processing, fatigue, and short-term memory,” she says. “Just having somebody like Melanie who understood what I was going through and was able to articulate things I wasn’t able to articulate and affirm what I was naming was really important to my recovery.”
Rachel, Tracy’s care partner, also found the partnership with Melanie really valuable and took advantage of Kandu’s care partner resources. Rachel was on calls with Melanie and Tracy and attended a care partner support group.
Rachel also met with Melanie individually when she had questions or needed support. “There were times when Rachel was perceiving that I was being non-compliant,” says Tracy. “Melanie was able to talk her through that and how to approach it.”
Care partners often need guidance on how to best support their partner through their recovery journey. “Stroke also impacts care partners and we want to be able to provide them with resources and support to help them care for their loved ones,” says Melanie.
Taking Control of Her Recovery and Rebuilding Trust in Healthcare
By the time rehearsals at the Metropolitan Opera started, Tracy went to New York feeling confident. She credits that confidence to her support team, including Melanie, who helped her get there. “I can't express enough what a life changing thing that has been for me,” she says. “I would say that my Kandu Navigator was a huge bridge for me and feeling more comfortable and demanding my own compassionate care.”
In addition to her career as an opera singer, Tracy has a parallel career in fat activism and creating community and resources for fat people. “We don’t get unbiased health care,” she says. “That leads to negative health outcomes for us.”
Tracy feels like one of the reasons she had a stroke when she was 37 was because of the negative interactions she previously had with the healthcare system. “My stroke could have been avoided if that's not the path that my life took,” she says. “Kandu reaffirmed my belief that there are compassionate people in health care who really care about the human beings that are on the journey.”
Tracy’s experience with Kandu helped rebuild her trust in the healthcare system and has ignited her passion for her activism work.
“Kandu just really saw me as a person first and what I needed, and that was really meaningful for me,” she says. “Kandu empowers stroke survivors to realize that they are not alone. There is a community of survivors and navigators who can help them with the resources that they need to recover.”
